We had to be at the hospital by 7:00 a.m. to check Susan in for the procedure. It was done in the short-stay surgery unit, so after we arrived and filled out the requisite forms, Susan was assigned to a semi-private (two bed) room to be seen by the assorted medical staff to get her ready for anesthesia. They gave her a tranquilizer (Versed) via her g-tube so she wouldn't freak out when they put in the I.V. After a few minutes, she was happily stoned and watching cartoons from the hospital bed. John and I hung out with her the entire time, handing her crayons to fill in the hospital coloring book (color your organs!), and signing more forms. Around 10:00, they took her in a wheelchair to the procedure room, which was about the size of a large closet.
We stayed until the anesthesiologist had given her some nitrous oxide and she fell asleep. They put the I.V.'s in after she was out, so mercifully neither she nor I had to watch them find a vein on the bank of her hand. The procedure itself took about an hour, during which time I sat in the surgery waiting room and crocheted. The surgery waiting room in Children's Hospital is not a happy place. Fortunately, I wasn't there long. A nurse came to get me once the procedure was done and Susan was waking up.
We were taken back to her room to wait while the sedation wore off so we could go home. She had to drink four ounces of water and keep it down before she could be released. She didn't have any trouble keeping it down, but she only drinks in tiny sips, so it took a while to get four ounces of water into her. They finally cut her loose at about 2:00. She had not had anything to eat or drink since midnight, aside from the four ounces of water, so she was hungry and pissed off. She yelled the whole time I was carrying her out - awkwardly, as she's getting pretty tall these days - and sat down in the middle of the sidewalk in front of the main doors to the hospital, still dressed in her monkey jammies, where she announced, "I want to stay here." She has totally got the passive resistance thing DOWN. Frankly, I'm surprised security didn't come out to check my I.D. and make sure I wasn't hauling off somebody else's screaming kid.
Once I got her home, she was quite happy to be set up in my bed with some soft pillows and cartoons on the t.v. She seemed to feel fine, albeit a little sleepy. I was worried that the wild screaming behavior was going to go on for a while, but she actually settled in pretty well. She asked for some juice, and sipped on that for a while, but only got a couple of tablespoons of liquid since the lid on the sippy cup I gave her only drips a few drops at a time.
The big question, of course, is how she is going to do eating on her own from 7:30 a.m. to 7:30 p.m. every day. Part of this feeding protocol is that for eight weeks, she is under no pressure to eat if she doesn't want to. During this time her body is healing from the discomfort of years of medical interventions through her esophagus and stomach, and behaviorally we are all on vacation from trying to make her eat. I can offer her food, but I can't spoon-feed her or insist that she eat anything.
She's been doing pretty well with eating during the day for a few months, but we always have to spoon-feed her and insist that she finish her portion of food. I'm not sure how much she's going to eat if it's totally up to her. Lately, anytime we feed her, whoever is doing the feeding has to hold tightly onto the bowl of food or she will grab it and throw it on the floor. Same with drinks, or anything we are trying to eat ourselves. This does not make for peaceful family mealtimes, and dinner together out of the house is out of the question. I talked yesterday with the behavioral specialist who leads Susan's social skills playgroup about arranging some focused therapy just to deal with behavior at mealtimes.
So with all that said, this afternoon she has been calmly drinking lemonade through a straw, and ate about a third of a pudding cup by herself with no prodding from me. She actually brought the pudding cup to me and asked me to open it, then set it down on the table when she was done, without throwing it on the floor. I'm skeptical that she'll remain this cooperative once all the sedatives have fully left her system, but it's nice to have an early encouraging sign. I've got to figure out what I can tempt her with for dinner. Maybe I'll just let her have the rest of the pudding cup. Naturally we want her to eat a variety of healthy foods, but while we're on vacation from feeding-related stress, the important thing is just to let her have foods she likes.